My life with Ehlers Danlos syndrome

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Monthly Archives: November 2017

I am really feeling better. I have taken a giant step back, I feel. I am streamlining my life.

I have divested myself of my Beauty blog. That was difficult. I’m disappointed. I enoyed that so much. I don’t know that it was hugely popular, but I enjoyed it. The commitment was too much, however. I will still continue to play with makeup. It is excellent therapy. It keeps my hands nimble, keeps me moving and motivated. I have a reason to sit up straight for a while, although I can lie down and apply makeup!

I’v pared down my Facebook friends list. I was originally going to delete everyone, and keep my account only as an identifier to log on to websites, but as I was deleting people, there were some who… well, I just couldn’t get rid of right away. I thought I would do two phases. Then, I decided to live with the smaller list for a few days. I like it. So far, it might be the level of socializing I need. Unfortunately, in my haste, I know I let some people go, people I probably shouldn’t have. I can’t remember everyone, though. I do hope they will be back.

After the US election last year, I added tons of friends, thinking there would be opportunities to make some great friendships. I did make some friends. But I overestimated my ability to actively participate in friendship. It’s also interesting to see who had left long ago. But I think this was a mistake, overall. As social and gung-ho as I sometimes feel, I sometimes don’t take the time to guard my emotions or protect myself from potential toxic friendships. I need to be more vigilant.

I feel like I have been doing a lot of things in the wrong way lately. Perhaps pushing things too hard when I should be letting go. I’ve been complaining and feeling that I have no friends, but I do, and I have. I couldn’t see them for the riff-raff. It’s embarrassing to admit, but I would be disingenuous if I didn’t. I think, however, those who have been in acute pain for any length of time will understand, at least, how I may have been feeling.

I’m feeling far more zen. Focusing on myself. My family. Becoming well within myself. Banishing negativity. It is hard, because my body is going through hell, but I know it’s for the best.

The muscles in my back have been killing me, partly from getting rid of stress, partly from overdoing it. My head still hurts. I have almost constant migraines and facial pain, but I try to not think about it. Keeping up with the medications help.

Another issue is that I am bad at taking my medication. I am now committed to taking my full dose at proper times, and it’s helping a lot. I know I am being stupid about this, but I lost a bunch of friends on a message board when someone decided I was a drug addict for taking my medication (it was the wrong type at the time, not a good fit, I was going through a nightmare on this stuff, so I really wasn’t great at defending myself) and it’s affected me. I am working on this.

My kids are really struggling. I am trying to be more present for them. My son does not, in fact, have Autism, but a series of learning disabilities. My daughter, does have Autism. Both have anxiety disorders. Brilliant kids, struggle to leave the house.

I’m going to take a couple of weeks off. I have nothing left. I’m completely empty of anything valuable. I’m not coping well, and I need to reevaluate some shit.

I need to rest. I need to get over this flu. I need to get warm. I need to reinvigorate myself. I feel like I’m sitting around whining. This is not who I usually am, nor who am I happy being. I need to take some time to reflect.

Things have been really complicated here for the past couple of weeks, and I need all my resources to refocus our family. I act as main cheerleader, and my distraction lately has resulted in a lot of problems with school.

I’m not happy now. I need to find out what might actually make me happy. It may be as simple as shaking the funk that accompanies flu. It may involve serious house reorganizing.

I received an email this morning telling me that the reason my old pain management doctor was on leave was because he sexually assaulted three people and the College is calling for more stories. The clinic is being shut down. They didn’t hide their glee. They couldn’ t wait to lay their story on the College!

Look, I’ve heard the rumours. I’m horrified. I’m disgusted. I don’ t know if there are any people out there who aren’t monsters. Yes, people. Women have been just as disgusting to me as men. Which is why I’m sitting here alone.

I really don’t understand why you have to clobber me repeatedly with the facts. I said I wasn’t sure what was happening, because I heard your version, everybody has heard your version, but the facts are playing out differently.

I am having appointment after appointment booked with… the new Head of the Wasser Pain Clinic? Dr. Peng! We go way back! He’s amazing! Very different from Dr. Gordon! Will this be permanent? Nobody knows yet.

What you don’t seem to understand, is that Dr. Gordon was always cordial to me. Was that because my husband was there? I don’t know. But he was the first person to listen to me. So I can’t throw him under the bus for a game of telephone. The first person to say he assaulted me, absolutely. I don’ t think he’s not capable of it. I just don’t lose my mind over non-verified conjecture. We are talking about a fifteen year relationship, here.

Anyway, moving forward, if anyone could show anyone else some compassion for losing their long term doctor, not being able to access care, that would be great. I sat here for three months not being able to sit up for more than fifteen minutes most days because my pain was so bad, and I couldn’t arrange to see anyone as he went on leave right before my appointment. If I sat up too long, I’d start puking.

I think if Dr. Peng is truly taking over, things will look completely different at Wasser, it will be like a breath of fresh air. The man is a genius! He is very strict, though. Doesn’ t like fatties. He treated me so differently this time around when I was skinny. 🙄 my only complaint.

I’m going to go process this some more. (Cry) I really only have to muddle through until April, when my appointment with the EDS clinic happens. I’m expecting big miracles from them!

Although I think I’m done with the cat puking phase… 😂. It’s terrible when you have two kids in school, and a husband who is in different offices. He has to work in different spaces sometimes. Not to mention the amount of doctors offices and hospitals we hang out in. I feel like im not catching things as often as I was, and I’m getting over them more quickly, so there’s that.

So I’ve been curled up in warm blankets, shivering. My husband was even with me on Monday, but I wasn’t too bad then. Tuesday I slept, and Wednesday, I alternately slept and expelled kittens.

I was going to try and do some things today, but i asked my husband for some warm clothes, and he laughed at me and handed me the cold medicine. The nighttime stuff. I suppose he’s right. I’m so achy and cold I will probably need today just to warm up.

It’s not THAT bad a flu, though. Might as well coddle myself, since I have the opportunity! Warm blankets… my shoulders are really sore, though. Incredibly sore. They go along with the rest of the body aches, but I’ve never had anything target my shoulders before. Strange.

Oh, and our neighbors are having work done on their house this week and it echoes right into our bedroom. Good thing I can sleep through almost anything. Daughter brought me noise cancelling headphones and i slept through my alarm. 😃

Ok. Time for rest. We’re all getting flu shots when healthy. I insist. I’m not doing this all winter. I’ll be down to my birthweight.

I had a quiet weekend. My husband wasn’t feeling well, and is currently lying beside me trying to rest in the middle of the day. Something he is lousy at. The darling got up after I fell asleep on Thursday and made me a FODMAP friendly cake. It was delicious. I think there is some left. Very moist.

I also received a lovely crystal bunny. It’s called Rabbit with Roses. My husband has been buying me Swarovski necklaces for years. I also collect rabbits. My son also points out there are three roses and three people in the family. ❤

I spent most of the weekend puttering around cleaning out drawers and sorting my makeup so it’s accessible and neat. Not everyone’s idea of a good time, but one of my favourite things to do. I do think I overdid it a bit, as I woke up this morning a bit sore, but as my husband was taking his temperature, so did I. I’m running a slight fever, so I must have caught something going around here. We need to make time for our flu shots this year. Unfortunately my husband’s year end is October 31, so he’s very stressed.

As I was cleaning out my dresser, I found this little guy! A Zebra bunny! I collect bunnies, and I collect zebra things, because of EDS. 😊

I received so many birthday wishes this weekend. It was nice. A bit overwhelming! I’m not used to so many people! I got in touch with most people, I think I got everyone. There are a few people I still want to talk to, though.

I called my Grandma yesterday and had a nice long chat. So great. I miss her.

Christmas is already becoming an issue. I’m glad my husband has my back. My in-laws have a separate celebration so the families don’ t have to choose which family to see. My in-laws live an hour away, and last year they hosted and everyone went to a restaurant. I didn’t attend as I was ill. This year, my mother in law was lamenting my absence and was trying to make plans to ensure I could be there. My husband explained there was only a slim chance I could attend if it was in my own house, never mind making plans for me. And she is in her eighties and having trouble with stairs, so she’ s sacrificing a lot. With my head, even though it’s better than it was, I just don’t think the stress of the holidays is going to help it. Plus weather exacerbates the problem.

Next door has construction going on, which is one thing with the intermittent hammering, but then they’re blasting a television set and then drums? Am I in a psychological experiment? 😂😂😂 Duh, I think they are setting up sound equipment.

I have been so neglectful of keeping you updated, I really should be ashamed of myself. However, I have experienced a very disruptive two weeks, and I am merely catching up now.

Firstly, today is my 47th birthday. (Cheers, applause) I take birthdays pretty darn seriously. I always have. Partly, because it gives me an excuse for self-care, which is not something I allow myself on a regular basis, although I am getting much better. I tend to celebrate myself for a week or a month. Depending. I have never celebrated my birthday with a party as an adult. I only had a couple of parties as a kid, then we had the family parties where we celebrated everyone’s birthday that month. In my 20s, we were too poor and I was always working, then babies and now I’m eating so funny, and I can never get anyone together. The banking industry has its year-end on October 31, so most of my friends were really busy these past two weeks to a month. Including my husband. I hope he starts coming to bed before I’m on my last leg now!

Enough of that whining, Sephora started their Rouge Sale this morning, so I saved up for ages! Bought tons of goodies! Yay! Toys!

It seems my Botox kicked in on Monday sometime. So I’m feeling much better. I need to be very careful and ensure I lie down, avoid stress, eat properly, relax, rest, but as long as I take care I have a lot of improvement. I’m excited for Christmas!

It seems our son may not have autism. He was evaluated with the school psychologist, and while he presents as autistic, he is very anxious and has some serious learning disabilities we are trying to negotiate. They involve information processing and executive function. Once these are rectified, he may do just fine, and the autistic appearance will hopefully fall away. If it doesn’t, then he is autistic and we have more to work on.

Still having trouble with daughter attending school regularly. Her anxiety is just overwhelming.

So that’s what has been occupying my day to day. Both kids have needed more time from me, so I’ve been there for them. I’m tired today. Mellow. This afternoon cries for a nap.

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Disclaimer

This is intended to be a blog of my experience with a medical condition. Please seek medical advice before trying any medical diet, procedure or following any advice you read here. Because our bodies vary so much, I would hate for you to get sick from something that worked well on me.